Quality of life and mental health of children suffering bleeding disorders according to parent-report.


Background: There have been several researches on the impact of rare diseases on quality of life (QoL) and mental health. Previous studies found that bleeding disorders, probably due to prophylactic treatment, do not impact QoL and mental well-being in children and adolescents; some findings suggest impairments in emotional, social and family functioning and increased prevalence of attention deficit and hyperactivity disorder, however. Aims: The aim of the study was to assess QoL and psychopathology of children and adolescents suffering in bleeding disorders and compare them with healthy control and patients with attention deficit hyperactivity disorder (ADHD). Methods: In a cross sectional design, parents of children and adolescents with bleeding disorders (N = 25), ADHD (N = 25) and healthy control (N = 25) fulfilled the Inventar zur Erfassung der Lebensqualitat von Kindern und Jugendlichen (ILK) and the Strength and Difficulties Questionnaire (SDQ) assessing QoL and psychopathology. Results: Parent-rated QoL did not differ between children with bleeding disorders and controls. Parent-rated QoL in the ADHD group was significantly lower in all but one (family life) domains than in the clinical group. Children with bleeding disorders showed significantly less psychopathology than controls in SDQ total difficulties score, peer problems, and emotional problems. According to parent-report, children with ADHD had higher scores on all but one SDQ subscale (prosocial behavior) than children with bleeding disorders. Conclusions: Children and adolescents with bleeding disorders do not show impairments in QoL and mental health according to parent-report. The impact of bleeding disorders on QoL and mental well-being is much lower than the impact of ADHD.